Characterization of a real-world population with pediatric epilepsy point-of-care standardized data collection as a tool for healthcare quality improvement and disparities research in Canada

IF 2.3 3区医学 Q2 BEHAVIORAL SCIENCES

Epilepsy & Behavior Pub Date : 2025-09-04 DOI:10.1016/j.yebeh.2025.110684

Morris H. Scantlebury , Sabrina D’Alfonso , Fejiro Erome , Juan Pablo Appendino , Alice Ho , Julia Jacobs , Adrian L. Rabinowicz , Enrique Carrazana , Jeffrey Buchhalter

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引用次数: 0

Abstract

Objective

Electronic health records offer the opportunity for quality-improvement (QI) initiatives addressing health disparities in epilepsy care. The Pediatric Epilepsy Outcome-Informatics Project (PEOIP) at Alberta Children’s Hospital implemented point-of-care data entry into a standardized pediatric epilepsy electronic note as part of routine clinical care to support QI initiatives. Our study validated collected data by assessing the prevalence of patient characteristics, ethno-racial background, and 4 of the most common severe epilepsy syndromes: infantile epileptic spasms, Dravet, Lennox-Gastaut, and developmental epileptic encephalopathy with spike-wave action in sleep.

Methods

Demographic and clinical characteristics were drawn from the entire population of pediatric patients (≤18 y) with ≥ 1 standardized electronic note from January 1, 2016, to March 23, 2022. Descriptive statistics were compared with published sources.

Results

The dataset contained 18,889 notes from 3588 patients and was in general agreement with published literature, with a slight male predominance and focal onset more common than generalized onset diagnosis. Data for the 4 severe epilepsy syndromes were also similar. Using open-ended questions, self-reported parental ethno-racial data were available for 49.6 % of patients; this increased to 95.5 % (n = 1861) in those patients whose first note was a standardized electronic note. Results generally reflect Canadian census findings and published literature.

Significance

The PEOIP is a comprehensive pediatric clinical dataset in a tertiary epilepsy center and reflects published literature for pediatric patients with epilepsy and data for the 4 severe epilepsy syndromes were also similar. for similar populations. Ethno-racial background data were reliably collected at point of care and provide a representative sample of pediatric epilepsy in Alberta. The PEOIP dataset represents a valuable baseline for QI initiatives and disparities research.

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现实世界儿童癫痫患者的特征，作为加拿大医疗质量改进和差异研究的工具的标准化数据收集

目的电子健康记录为解决癫痫护理中的健康差异提供了质量改进（QI）倡议的机会。艾伯塔省儿童医院的儿童癫痫结果信息项目（PEOIP）将护理点数据输入到标准化的儿童癫痫电子记录中，作为常规临床护理的一部分，以支持QI倡议。我们的研究通过评估患者特征、种族背景和4种最常见的严重癫痫综合征的患病率来验证收集到的数据：婴儿癫痫性痉挛、德拉韦、Lennox-Gastaut和睡眠中伴有尖波作用的发展性癫痫性脑病。方法收集2016年1月1日至2022年3月23日期间所有标准化电子病历≥1份、年龄≤18岁的儿科患者的人口学和临床特征。描述性统计数据与已发表的资料进行比较。结果该数据集包含3588例患者的18889条记录，与已发表的文献基本一致，男性略占优势，局灶性发病比全局性发病更常见。4种严重癫痫综合征的数据也相似。采用开放式问题，49.6%的患者可获得自我报告的父母种族数据；在第一次记录是标准化电子记录的患者中，这一比例增加到95.5% （n = 1861）。结果一般反映加拿大人口普查结果和已发表的文献。意义：PEOIP是某三级癫痫中心的综合性儿科临床数据集，反映了小儿癫痫患者的已发表文献，4种严重癫痫综合征的数据也相似。对于相似的人群。在护理点可靠地收集了民族-种族背景数据，并提供了阿尔伯塔省儿科癫痫的代表性样本。PEOIP数据集为QI倡议和差异研究提供了有价值的基线。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Epilepsy & Behavior 医学-行为科学

CiteScore

5.40

自引率

15.40%

发文量

385

审稿时长

43 days

期刊介绍： Epilepsy & Behavior is the fastest-growing international journal uniquely devoted to the rapid dissemination of the most current information available on the behavioral aspects of seizures and epilepsy. Epilepsy & Behavior presents original peer-reviewed articles based on laboratory and clinical research. Topics are drawn from a variety of fields, including clinical neurology, neurosurgery, neuropsychiatry, neuropsychology, neurophysiology, neuropharmacology, and neuroimaging. From September 2012 Epilepsy & Behavior stopped accepting Case Reports for publication in the journal. From this date authors who submit to Epilepsy & Behavior will be offered a transfer or asked to resubmit their Case Reports to its new sister journal, Epilepsy & Behavior Case Reports.